Sometimes I don’t want to talk about my disability

You might have heard that I attended a Shawn Mendes concert a few weeks ago and I’ve posted about the experience a few times (Okay, okay, I hold my hands up, maybe a little more than that) over on Twitter. My timeline hasn’t been filled with disability related posts and having that break from it has been quite refreshing.

I gave myself a little break from blogging over the last few weeks, anxiety and uni work being two of the main reasons why but I also found myself feeling uninspired when it came to writing about my generic niche of disability.

I figured that the reason why was because I didn’t want to talk about it and this hasn’t been the first time.

Sometimes I don’t want to talk about my disability, not only on my blog but offline as well and of course, this has spurred me on to tell you why. Maybe I’m not the only one who feels like this?

THE STRUGGLE OF OPENING UP ABOUT MY vision impairment 

I remember being in primary school, walking through the classroom, minding my own business but the next thing I knew, I was flat out on the floor after tripping over a chair that I didn’t see. Everyone turned around, stared and laughed and I of course went red in the cheeks, trying my best to brush off what had just happened. 

Why am I telling you this? Well, even though it was something so small and innocent, the incident made me feel quite embarrassed of my disability which then left me wanting to hide it as best as I could. Turns out that’s not so easy when you’re reading books with print 5x larger than the rest of the class or when tapping away at a laptop rather than writing your work down, pen to paper.

But when I could, I’d hide my vision impairment because I desperately wanted to fit in, in a place where I thought everyone saw me as being different.

I thought that talking about my disability would only encourage more questions, more confusion, more stares and more laughter. 

So, unless it was to a professional who I had to explain the changes in my continuously deteriorating eyesight to, I don’t remember talking much about my vision impairment with anyone else, or at least not in much detail. Why? Because I wanted to push it to the back of my mind and try to avoid the fact that the amount I could see was becoming less everyday.

I didn’t want to use a cane and I could find my way around school quite easily so unless I told someone about my vision impairment or they saw me tripping over something or walking into a wall, it was quite hard to tell. Admitting I had a vision impairment to new people was a difficult thing to do, something I didn’t want to talk about due to this urge I had to fit in.

As I’ve grown to accept my impairment, talking about it has become easier over time and I’ve shared a lot of detail about it online. But I can still feel overwhelmed by it and that’s when I falter. 

SOMETIMES I DON’T WANT TO TALK ABOUT MY DISABILITY…

I never expected to be but now, I’m a disability advocate, striving for change, to raise awareness and help others who are in a similar situation. So I feel guilty in a way that I’m admitting this but there’s something spurring me on to acknowledge the subject.

Having an impairment and/or health condition doesn’t mean that you have a duty to talk about it. Those of us who share our experiences choose to do so but it doesn’t mean that we feel confident or comfortable doing so 100% of the time, I know I don’t anyway. 

A lot of people don’t understand disability so explaining the ins and outs can be quite exhausting at times. 

People are full of questions; ‘When were you diagnosed?’, ‘So, how much can you see?’, ‘Does anyone else in your family have sight loss?’, the answers to said questions are engrained in my mind now, almost like a script and it can be exhausting to say it over and over again. 

Now, I’m not saying that if you have a question for me that you should stray away from asking because I’ll always encourage people to ask rather than making assumptions. But one question after the next can get a little overwhelming. 

I’ve found myself answering people’s questions and addressing their misconceptions even when I don’t necessarily want to talk about sight loss because, even though I can get tired of explaining, the passion I have to help people to better understand creeps through and almost propels me to answer without even realising. 

I’ve learned to accept my disability but I still have bad days, I still have moments when I wish I could see the world like everyone else and when I have those thoughts, talking about my vision impairment is hard because it can be something I wish I didn’t have to do. 

Sometimes, I wish I could hide my disability, sometimes, I wish I could be your average 20 year old who can work in a cafe, who doesn’t have to plan every train journey or book assistance at least 24 hours in advance, I wish I could go to concerts just like that without having to ensure I’d get assistance at the arena.

There’s not a day that goes by without me talking about my disability in one way or another, whether it’s online, on my blog, when I’m out and about with my cane or when I have to fight for equal access and accessibility.

It can all get too much. 

I promote positivity a lot on my blog because focusing on those positives helps me in so many different ways, I’ll always acknowledge that sight loss has contributed to my life in positive ways but, between you and me, sometimes I wish I wasn’t vision impaired. Even if it’s just a fleeting thought, it still comes around from time to time and i think it’s only natural that it does. 

There are still times when I want to hide, still occasions when I don’t want to talk about my disability. Maybe that comes down to the misconceptions that are out there but I think it’s also because I just want to feel ‘normal’.

With all this being said, I’ve seen a lot of changes in myself since I started talking more openly about my disability and I’ve stumbled across this new found confidence since sharing my experiences on my blog and in the media.

I find motivation to carry on doing what I’m doing when someone sends me a message saying that my blog has helped in some way, and I feel even more driven when charities ask me to get involved with campaigns.

I want to show people that it is possible to overcome challenges even in a world which wasn’t designed for some of us. But although I’m passionate about sharing my experiences, there are times when I don’t want to share my emotions, times when I want to be alone with my thoughts and sometimes i want to hide them and hide from the world that makes me feel them. 

It’s okay to admit that. 

I’ve been writing this blog for just over four years now, I’ve worked with charities such as the RNIB on various campaigns, I was a Young Ambassador for VICTA Children, I’m now a Global Brand Leader for InvisiYouth Charity, and I’ve spoken openly about my disability on TV and radio programmes, someone even thought that my job was raising awareness of sight loss in the media, what a perfect role that would be!

My point is, I do all these things because I want to raise awareness of the issues that face vision impaired people and to hopefully help others. If I can help to make the smallest difference to making people more aware of sight loss or making disability more integrated in society, I’ll do it but sometimes, I’m just tired of fighting against the challenges.

I need to remind myself that although I’ve established myself as a disability blogger, I don’t have a duty to talk about it every week and if I’m having one of those days or weeks when I want to hide from it or don’t fancy putting my feelings into words, that’s okay. I have no obligation to. No one does.

There have (and still can be) times when I’ve felt different and left behind because of my vision impairment and sometimes I just want to put those moments to the back of my mind and focus on other things that help me to forget; my family, having a good time with my friends, purchasing unnecessary items for my wardrobe, music, Shawn Mendes…

I love doing what I do and I don’t see myself stopping any time soon but it’s okay to admit that you can get tired of addressing the stigmas even if you are an advocate/activist.

We all need a break.

Sometimes I don’t want to talk about my disability because I’ve had the same conversation 4 times that day already and it can all get very exhausting. 

Sometimes I don’t want to talk about my disability because it reminds me of the struggles, the challenges and the hurdles I face on a daily basis, it can get overwhelming. 

Sometimes I don’t want to talk about my disability because I might be having a ‘there’s more interesting things to talk about’ kind of day. 

Sometimes I don’t want to talk about my disability because I just want to be me.

I’m going to be slightly hypocritical of myself now but I do like talking about my vision impairment and raising awareness of it, I really do, but sometimes I’d rather talk about the weather, the clothes I’m wearing, the latest Netflix series or the drama on the Coronation Street cobbles. 

Is there anything wrong with that? I think not. 

When you spend a lot of your time talking about your disability, getting down to the nitty gritty of how much you can see and the exact dates of your diagnosis, you can feel like a break is needed. 

Maybe you feel the same about a certain aspect of your life that you find slips into conversation quite often, maybe it’s your job, your degree, your childhood or even your hair colour.

Maybe, the things we seem to be talking about the most aren’t the most interesting things about us so it’s natural to want a break from the most obvious, most common conversation starters.

There is so much more to me than my disability and sometimes, I’d like to focus on those things rather than dwelling on sight loss.

So here I am, ironically talking about disability in a way by also telling you that sometimes I don’t want to. There are times when I want to hide my vision impairment and there are times when I’ll want to tell you why.

I have a lot of experiences and messages to share and I’ll always feel passionate about advocating them. I advocate an aspect of my life and my identity that I sometimes wish I could hide, but I talk about it in the hope that others realise that hiding or feeling embarrassed like I once did are emotions we shouldn’t have to feel.

Have you or do you struggle to open up about your disability or any other aspect of your life? Is it something that you find you don’t want to talk about sometimes? I think we all go through spells of wanting to hide something that we think people will judge us for but I hope that with the number of us that are raising awareness, the world can slowly become a more accessible place and maybe there will come a day when we’ll feel like we don’t have to fight against the challenges anymore.

Elin x